Cookie Notice

This site uses cookies. By continuing to browse this site, you are agreeing to our use of cookies. Review our cookies information for more details.

skip to main content

Insurance Delays and Denials for Hereditary Angioedema Patients Lead to Increased ER and Urgent Care Visits, Higher Anxiety, and More Missed School/Work Days

AAAAI News Release

April 21, 2023

April Presnell, Media & Member Communications Manager
(414) 272-6071

Of those experiencing insurance delays or denials, 70% reported increases in angioedema attacks, according to new research from JACI: In Practice, an official journal of the AAAAI.

In a survey of hereditary angioedema (HAE) patients who reported insurance delays or denials, 70% reported more angioedema attacks, more than 50% reported missing work or school, and 25% reported more visits to urgent care or the emergency room. This new research has just been published in The Journal of Allergy and Clinical Immunology: In Practice (JACI: In Practice), a journal of the American Academy of Allergy, Asthma & Immunology (AAAAI). The research was done in partnership with the HAE Association who funded the work.

“Barriers to care due to insurance delays are well documented, but data is lacking for HAE patients,” said Nonie S. Arora, MD, MBA, corresponding author of the study. “We set out to examine not only the impact those denials and delays had on physical health, but also mental well-being and familial hardships.”

HAE is a rare and potentially life-threatening disorder caused by a genetic defect that can cause episodes of swelling, typically in the face, hands, feet, or genitals. Dangerous swelling can also occur in the airways of the lungs or the intestinal walls. While modern therapies can help, insurance delays and denials have become more common.

Researchers surveyed 20 HAE patients who recently reported insurance issues related to medications, with 19 participating in one of four focus groups. All patients also participated in the validated angioedema control test.

Among the 20 patients surveyed, 80% reported regaining access to their medications. Patients who did not regain access had worse control of their angioedema symptoms, according to the validated angioedema control test results.

“Several themes emerged when we looked at data from the focus groups,” Dr. Arora said. “Patients described having to ‘live in a bubble’ and avoid usual activities when they lacked access to their HAE medications. In all, 90% of those surveyed experienced increased anxiety. Some participants reported difficulty participating in routine tasks, like cooking or cleaning. This shows that insurance delays and denials cause huge disruptions in our patient’s lives.”

The full list of themes that emerged from the focus group included:
•    Negative emotions and heightened anxiety
•    Missed work/school and negative financial impacts
•    Significant impact on family life and friends
•    Avoidance of a broad spectrum of activities that may trigger angioedema symptoms
•    More frequent HAE attacks leading to emergency department visits and hospitalizations
•    Step therapy (insurers require patients to try alternative medications) resulting in more attacks
•    Frequent prior authorization, which limits access to expensive medications, and repeated lab work
•    Minimal notice of insurance changes
•    Excessive time spent communicating with insurance companies, pharmacies, and physician offices
•    Reliance on many sources of support

In February of 2023, the AAAAI released a Position Statement on the impact of Prior Authorization and the harm it causes patients. Click here to learn more about the AAAAI’s current advocacy work related to prior authorization. You can also learn more about HAE here.

The American Academy of Allergy, Asthma & Immunology (AAAAI) is the leading membership organization of more than 7,100 allergists, asthma specialists, clinical immunologists, allied health professionals and others with a special interest in the research and treatment of allergic and immunologic diseases. The AAAAI is the go-to resource for patients living with allergies, asthma and immune deficiency disorders. Established in 1943, the AAAAI has more than 7,100 members in the United States, Canada and 72 other countries. AAAAI’s Find an Allergist/Immunologist service is a trusted resource to help you find a specialist close to home.